--- title: Diagnosed with HLH at 28, an Unrelated Donor Gave Him a Second Chance at Life url: "https://www.yyhmedical.com/en/stories/hlh-unrelated-donor-hsct-recovery" type: Article inLanguage: en-US disease: Hemophagocytic Lymphohistiocytosis treatment: Hematopoietic Stem Cell Transplantation datePublished: 2026-06-12 --- # Diagnosed with HLH at 28, an Unrelated Donor Gave Him a Second Chance at Life > After a sudden HLH diagnosis and no suitable donor match within his family, a fully HLA-matched unrelated donor found through the China Marrow Donor Program helped make an allogeneic stem cell transplant possible - and gave him a new beginning. Summary: At 28, Xiao Wei (pseudonym) sought medical care for persistent fever, severe fatigue, and yellowing of his skin and eyes, and was ultimately diagnosed with hemophagocytic lymphohistiocytosis (HLH). Because the disease was progressing rapidly and his condition was critical, Dr. Jun Zhu's team at GoBroad Shanghai Liquan Hospital developed a treatment plan to first bring the disease under control and then proceed to allogeneic hematopoietic stem cell transplantation. When no family member was a suitable donor match, the team promptly initiated an unrelated donor search through the China Marrow Donor Program (CMDP) and found a fully HLA-matched donor. In March 2026, Xiao Wei underwent an allogeneic stem cell transplant and left the transplant unit after more than 20 days of treatment. Now more than two months post-transplant, his strength and ability to manage everyday activities are gradually returning. He has also begun sharing his treatment experience online, hoping to encourage others living with blood disorders. His story traces the journey from an acute, life-threatening diagnosis and the search for a donor to transplantation and early recovery - and shows how an unrelated stem cell donor can offer a patient a vital second chance. ![10216bcd-641f-49cd-a3c6-4c8785885814.png](https://gaobo-byh-h5.oss-accelerate.aliyuncs.com/images/20260912/990d9b621342a7d9dcf539ef678b7002_20260912220500.png "990d9b621342a7d9dcf539ef678b7002_20260912220500.png")  Xiao Wei never imagined that life would force him to stop so suddenly. At 18, he packed his bags and left home for an unfamiliar city. Over the next decade, he built a career in mobile phone sales and became a consistent top performer. He was always on the move, filling every day with work and measuring his progress by results. Illness barely crossed his mind - he had hardly even caught a cold in the previous nine years. He assumed life would keep moving at the same relentless pace. Then, in December 2025, everything stopped. It began with a fever and an overwhelming heaviness in his arms and legs. He thought it was an ordinary cold and expected it to pass. But the fever persisted, and then his eyes and skin began to turn yellow. His older brother drove him overnight from Ningbo to Shanghai, where doctors gave him a diagnosis he had never heard of before: hemophagocytic lymphohistiocytosis (HLH). It felt as if someone had suddenly pressed pause on his life. The days that followed were spent beneath the white ceiling of a hospital room. The young man who had once thrived in the fast-moving world of sales was now lying in a hospital bed, watching every number on every lab report. ![040fee58-b1d5-41e9-a351-44eca56a37d0.png](https://gaobo-byh-h5.oss-accelerate.aliyuncs.com/images/20260912/16da8b238a50f391e5833fc8b8dd0339_20260912220522.png "16da8b238a50f391e5833fc8b8dd0339_20260912220522.png") January 2026 Yet even in the middle of that uncertainty, a turning point came. When no one in his family proved to be a suitable donor match, GoBroad Shanghai Liquan Hospital quickly initiated an unrelated donor search through the China Marrow Donor Program (CMDP). Fortunately, a stranger he had never met was found to be a fully HLA-matched donor - and was willing to donate hematopoietic stem cells. In March 2026, Xiao Wei successfully underwent an allogeneic hematopoietic stem cell transplant. After more than 20 days in the transplant unit, he was able to leave and begin the next stage of recovery. More than two months later, his hair is growing back, his strength and sense of control over his body are returning, and the facial swelling caused by steroids has subsided. He can now drive himself to the hospital for follow-up appointments. Only half a year has passed, yet to Xiao Wei it feels like half a lifetime. Illness disrupted the pace of his old life, but it also opened a new chapter. Throughout treatment, he continued sharing his experience online and livestreaming to encourage people to pay more attention to their health. He also connected with many other patients and exchanged words of support. “I received so much kindness from people I had never met,” he said. “Now I want to be a light for someone else.” ![21042319-8a09-422e-8c03-151b18df0b1c.png](https://gaobo-byh-h5.oss-accelerate.aliyuncs.com/images/20260912/58a4c47ab984dea7912c01304b3c561c_20260912220549.png "58a4c47ab984dea7912c01304b3c561c_20260912220549.png") June 2026: Xiao Wei with Dr. Bo Lü, a member of Dr. Jun Zhu's team **Patient Q&A** **Q1: At first you thought it was just a cold. What went through your mind as you learned you actually had HLH?** A: At first, I really thought it was just a minor cold. I had a fever and felt weak all over, and I assumed I could just push through it. But the fever went on for days. Then my eyes started turning yellow, and so did my skin. I was still forcing myself to go to work. Eventually I just couldn't keep going, so I went to a nearby hospital for a blood test. When the results came back, I was stunned. Hemophagocytic lymphohistiocytosis - I had never even heard of it. The local doctor told me this was not something that could wait and advised me to get to a hospital in Shanghai as soon as possible so I wouldn't miss the best window for treatment. That same night, my brother drove me from Ningbo to Shanghai. My mind was completely blank on the way. I kept thinking about how healthy I had always been - I hardly ever even caught a cold. How could I suddenly have something this serious? Part of me kept wondering whether the doctors had made a mistake, whether it could be a misdiagnosis. I just didn't want to believe it was real. It wasn't until all the test results were back and the hematologist sat down with me to explain the diagnosis and the treatment plan that it really sank in. I had no choice but to face what was happening. **Q2: How did you feel when your family members were not suitable matches, and then a fully matched unrelated donor was found?** A: HLH can progress very quickly and become life-threatening. In January 2026, I was transferred to GoBroad Shanghai Liquan Hospital. Dr. Jun Zhu was leading my care. He explained the plan clearly: first use chemotherapy to get the disease into the best possible remission, and then move ahead with an allogeneic hematopoietic stem cell transplant at the right time, with the goal of achieving durable complete remission. The medical team was highly experienced. I was still afraid of the unknown, of course, but once I started treatment there, I felt much more settled. As soon as chemotherapy began, my family members were tested as potential donors. When the results came back, none of them was a suitable match. Dr. Zhu told me that because my disease had come on so quickly and was so severe, an allogeneic transplant offered the best path forward. He recommended that, while I continued treatment, we immediately contact the China Marrow Donor Program to search for an unrelated donor. The waiting was the hardest part. Every day brought a little more anxiety. What if there was no match? And even if there was, what if the person didn't want to donate? Those thoughts kept circling in my head, though I tried not to let myself dwell on them. Then, a few days later, Dr. Zhu brought me the news I had been hoping for: there was a fully HLA-matched donor in the registry - and the donor was willing to help. At that moment, a huge part of the weight on my mind lifted. I knew there were still many challenges ahead - the transplant unit, the risk of graft-versus-host disease, and everything else that comes with transplant - but the most important piece was finally in place. **Q3: Once you learned that a fully matched donor had been found, how did you prepare for transplant? Were you nervous before entering the transplant unit?** A: Finding a donor made me feel much more secure, but I also knew the hardest part was still ahead. Before I went into the transplant unit, Dr. Zhu and the medical team walked me through the entire process again and again. They explained what side effects I might experience and how they would manage them. By turning the unknown into something I could understand, they made me feel much more prepared. Of course I was nervous. But by then I had accepted that fear wasn't going to change what needed to be done. Instead of spending every day imagining what might go wrong, I decided to get myself into the best condition I could and face the transplant head-on. In March 2026, I entered the transplant unit. ![0ab3062d-9e9a-4fdf-bfd3-7e1f6503b377.png](https://gaobo-byh-h5.oss-accelerate.aliyuncs.com/images/20260912/8f4a94c17ec1c96eab3c59b4b1c0d896_20260912220640.png "8f4a94c17ec1c96eab3c59b4b1c0d896_20260912220640.png") March 2026, inside the transplant unit at Shanghai Liquan Hospital **Q4: How did you get through those more than 20 days in the transplant unit?** A: Once I entered the unit, I first received high-dose conditioning chemotherapy to prepare my body for the transplant. Those days were difficult. I had almost no appetite and felt groggy and exhausted. But the hardest part was actually waiting for my blood counts to recover. Every day, I looked at my blood test results and hoped the numbers would rise even a little. The waiting felt like counting the hours in the dark without knowing when morning would come. The nurses and care staff in the unit were incredibly attentive. They would talk with me and help ease my anxiety. My family couldn't come inside, but they encouraged me every day by video call. Around the second week after the stem cell infusion, my counts finally began to come up. When I saw that upward arrow on the report, something in me lit up. I knew I had made it through the hardest part. **Q5: How has recovery been since you left the transplant unit? What is everyday life like now?** A: Leaving the transplant unit was only the first step. Recovery afterward is a much longer process. At first I was still very weak and would get out of breath after walking only a few steps. But I could genuinely feel myself getting a little better every day. My hair started growing back, and my strength slowly returned. Now, more than two months after transplant, I can drive myself to the hospital for follow-up visits. I'm still recovering, but compared with how I felt when I first became ill, I'm doing so much better. This illness taught me something very simple: health is the “1,” and everything else is just the zeros that come after it. I used to think I was young and healthy and had nothing to worry about. Now I understand that without your health, everything else becomes harder. **Q6: After everything you've been through, what do you hope for in the future?** A: Before I got sick, all I thought about was work, targets, and pushing forward. I always felt that slowing down meant wasting time. Looking back now, I was like a machine that never stopped running. Getting sick taught me what it really means to slow down. It doesn't mean giving up. It means understanding what matters - every breath, time with my family, and all those ordinary moments I used to overlook. Now I share my experience online and livestream to encourage people to take their health seriously. I've received so many messages of support from strangers, and many patients have written to tell me that my story gave them courage. That has made me feel that, although this illness knocked me down hard, it also gave me a new purpose: to use what I've been through to help people who are still trying to find their way through the dark. In the future, I want to live well, work well, and keep being someone who can offer a little light to others. ## Expert view Dr. Jun Zhu (Chief Physician; Medical Director, GoBroad Shanghai Zhaxin Hospital / Shanghai Liquan Hospital): As Xiao Wei's primary physician, I witnessed every step of his journey, from his HLH diagnosis through transplantation and into recovery. HLH can be extremely aggressive. In a patient like Xiao Wei, allogeneic hematopoietic stem cell transplantation offered the best chance of achieving durable remission. Treating a serious blood disorder requires a true partnership between the patient, family, and medical team. Xiao Wei and his family's trust allowed us to make the transplant decision decisively and move forward at the right time. Their constant support throughout treatment was equally important. Discharge after transplant is only the beginning of a long recovery. Rehabilitation, prevention and management of graft-versus-host disease, infection prevention, and relapse monitoring all require time and patience. We will continue to walk alongside Xiao Wei throughout this next stage. We are also grateful that Xiao Wei chose to share his experience. His story can offer hope and strength to other patients who may be facing some of the darkest moments of their own treatment journey. > This content is published with the authorization of the patient and their family, intended solely to share real experiences and health knowledge. It does not constitute a recommendation of any treatment plan or medical diagnostic advice. For specific treatment, please follow the guidance of a professional physician. --- Original (HTML):https://www.yyhmedical.com/en/stories/hlh-unrelated-donor-hsct-recovery This is a clean Markdown mirror for large language models; the original page is authoritative.